I feel like I have been remiss in my posts lately, because too many people have told me they have made them cry. As Christians, we are supposed to be a joyful people, so hopefully this post will seem more joyful. I will give it the old college try. I really don’t want this blog to become a bummer, because we are even supposed to bear our sufferings joyfully. So mea culpa, I will try and do better. Unless you all were crying happy tears, in which case, carry on!
My OB called me yesterday with the results of the blood test. As I had expected, she told me the test results were positive for Trisomy 21, more commonly known as Down Syndrome. I know this is the part where I am supposed to say I cried and heard the news with a heavy heart, but the truth is, I didn’t. I just didn’t. I was relieved that it wasn’t a terminal diagnosis, and I felt grateful to know this information early so that Scott and I can go ahead and prepare. When I told Scott the news, he took it the same way that I did. Her little heart is what is first and foremost on our minds, and really the DS seems pretty trivial in comparison. There are plenty of resources and support out there for children with DS, and we know plenty of wonderful families with children with DS personally. So, I know this may sound strange to some people, but we really didn’t grieve the test results.
I know that our society values intelligence, health, and success. However, a person could be highly intelligent, in excellent health, and the CEO of a Fortune 500 company and still be a horrible person. My primary goal with my children has always been to pass on the faith to them and that they be good people. And this can be achieved with any child God entrusts to me, no matter her intelligence or health status.
. . . for God sees not as man sees, for man looks at outward appearance, but the Lord looks at the heart.
1 Samuel 16:7
If there is anything sad about Regina, it is that her heart has a serious defect that needs fixing. If you feel the need to tell us that you are sorry, tell us you are sorry about that. Because we are too. We are not sorry that she has DS. She can lead a long and happy life with DS. Otherwise, we are just as joyful about her existence as we were when we first found out we were pregnant. And if her delivery goes well and her heart is looking well enough for us to take her home with us until her open heart surgery, we will be just as joyful at her delivery as we were for the deliveries of her sisters. We love her no less, and we have the advantage of knowing beforehand her health status and preparing for it.
I am grateful for Regina’s older sisters, because I know we can learn so much about how to love her from them. They, you see, are too young to have any of society’s preconceived notions and prejudices about individuals with DS and can love her unreservedly and unabashedly. Even in this trying time for Scott and me, our girls keep us laughing every day. They are such a blessing to us. And I know without a doubt that Regina will enrich our lives and be an enormous blessing to us too, no matter what happens with her health.
Mother Teresa, (who will be canonized on September 4th!!!) said to “love until it hurts.” Because love isn’t just something to make us feel good, it also entails sacrifice. Scott and I are more than willing to roll up our sleeves and sacrifice whatever we must for our girls, ALL of them. And I have asked Mother Teresa to pray for and intercede for our little Regina, because I know she always had a special place in her heart for unborn babies and their parents.
If any of you know of some good resources for parents of children with Trisomy 21, and also good resources for how we can prepare for her open heart surgery, I would be so grateful.
Also, if you are curious about the Catholic take on suffering in relation to kids with special needs, this post from This Ain’t the Lyceum is fantastic. Kelly’s sons have SMA and not DS, but the basic principle still applies, I feel.
Thank you, as always, for all of the love, prayers, and support. This world really does have so many good people in it, y’all. It is so reassuring to have visible reminders of that.
Tears of joy for your family! I had mothers’ intuition that my 4th would be born with a genetic syndrome of some kind and i was sure it would be Downs. He actually ended up having a different syndrome, but I was so at peace and okay with what I thought was happening, that I was strangely disappointed when he didn’t have it.
Anyways, I am so happy for your family to be blessed with another precious little girl and I know that her life will be blessed and happy with you.
So funny, I had a feeling that this child would have something too, so this really didn’t blindside me much. I have loved watching your little boy and how much he has accomplished. I know you are so proud of him.
Your faith is inspiring. I feel Father in Heaven’s love for you and for sweet Regina as I read your last to posts. You are not alone. Thank you for sharing your faith and your journey. Love and hugs♡
Hi! Welcome to the Ds family! I have a little guy, Spencer, who is almost 2 and has Ds. I honestly do not know what I would do without him. We found out while we were pregnant that he had Ds and to be honest, I grieved. I feel SO guilty about that now. He is an amazing little guy. I just had no clue about Ds and my doctors did not make it seem like it would be a blessing. Spence is such a blessing to me. To my family. Your older girls will grow to be so much more loving, patient, kind, caring, and accepting. And it is such an amazing thing to watch. (We have an older son too and watching him with Spence…watching them together brings tears to my eyes). I LOVE your attitude about Ds. People with Ds are definitely more alike than different. Hugs to you and you sweet family. Praying for Regina’s heart to be strong. xo Amanda
Thank you so much! It is good to be here. Yeah, I cried and grieved more about my other daughters, not because they had any health complications, but because I wasn’t ready to be pregnant again so soon. But like you said, I feel so guilty about that now, looking at their adorable faces. So, I decided not to do that with this pregnancy. I figure that some day I will look at her adorable face and wonder what all those doctors were so negative about. Thank you for telling me about your wonderful son!
Your steadfast faith is so beautiful and inspiring. Thank you for sharing your story. I’ll continue to pray for your family!
This is a beautiful post and you are so wise! Thank you for your encouragement to focus on what is really important in raising our kids!
I have been following your posts since Wren was born, and you have a wonderful family! I have a cousin with Downs and she is in her late 20s now and she truly is a gift from God! She’s always so happy and goes through life with a smile. Regina is lucky to be born into your family. I pray that God blesses you with strength and patience!
I love hearing that, thank you so much! And wow, you have been here from the beginning! I’m honored!
Love, love, love. So much love! Maybe (almost) St. Teresa can be Reggie’s patron saint!
Your faith is so inspiring to me! Thank you for your incredible example.
Your words are so beautiful and loving. I will continue to pray that Regina’s heart is healed.
We have a great aunt with DS. She has been the biggest and best joy to our family throughout generations. She’s in her 60’s now! My great grandparents said she was the best gift God ever gave them. Regina is going to be such a blessing. xoxo
Kimberly, you made me cry (happy tears)! Thank you so much for telling me.